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Subscribe to the Long Covid, MD newsletter for more long COVID content. Voiceover is available for every newsletter on the Substack app. Evaluating Long COVID Research, Treatments, and Medical Misinformation.  Today's episode is a cross-post from The Sick Times' podcast "Still Here."  In my conversation with hosts and journalists Miles Griffis and Betsy Ladyzhets, we discuss ways people with long COVID can better judge research, treatments, and online claims without getting overwhelmed by hype or pseudoscience. I also explain my approach to reading studies, thinking through off-label treatments, and spotting red flags in medical content. Timestamps 00:00 - Opening and why this episode matters for the long COVID community  02:35 - Dr. Khan introduces herself and her path from ICU physician to long COVID patient  04:41 - Why long COVID care still falls short and medicine has not caught up  08:28 - How off-label treatments work and how patients can think about them  12:28 - Dr. Khan’s process for reading a clinical trial or research paper  17:12 - How to bring research to a clinician without getting dismissed  20:48 - Choosing between sequential treatment and trying multiple interventions at once  24:20 - Triaging the most painful problem first in a complex illness  26:31 - Why long COVID care feels overwhelming and why prioritization helps  27:01 - Spotting pseudoscience and misinformation in long COVID content  30:06 - Red flags: certainty, conspiracies, “root cause” language, and brain retraining claims  33:22 - Staying hopeful and remembering long COVID patients are not alone  34:35 - Research update: skeletal muscle abnormalities in long COVID and ME  35:15 - Research update: large genetic study links fibromyalgia to the central nervous system  36:01 - Research update: racial disparities in long COVID diagnosis  36:48 - Credits and closing Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

Applying for Social Security Disability Insurance (SSDI) with Long COVID or ME/CFS is complex—and often discouraging. Many people are denied early and don’t understand why. In this episode, Dr Khan speaks with disability attorney Barbara Comerford, who has spent 30+ years helping clients navigate disability claims for complex, hard-to-document conditions. We break down:  How SSDI actually works (and who qualifies)  Why most claims are denied—and what that really means  The 5-step process Social Security uses to evaluate your case  What evidence matters for conditions like Long COVID  When to hire a lawyer—and how to strengthen your claim This is a practical guide to help you understand the system and make more informed decisions. Chapter Markers (Streamlined) 00:00 Why SSDI matters for Long COVID  06:45 Who qualifies + how SSDI actually works  12:30 The 5-step disability evaluation process  25:00 Why claims get denied (and how to appeal)  40:30 Evidence, lawyers, and how to strengthen your case Resources Mentioned in This Episode Social Security Administration (SSA)  https://www.ssa.gov/ Check your earnings record and quarters of coverage to confirm SSDI eligibility. Tri-State Disability Law Barbara Comerford’s law firm (SSDI and long-term disability cases) 866-444-6939Workwell Foundation Guidance on cardiopulmonary exercise testing (CPET) and instructions for the NASA Lean Test (dysautonomia assessment) Bateman Horne Center Educational resources on ME/CFS, Long COVID, and disabilityProject ECHO Webinar series referenced in the episode (including sessions on disability and chronic illness) Key Tools & Concepts Referenced NASA Lean Test – low-cost way to document dysautonomia symptoms CPET (Cardiopulmonary Exercise Testing) – objective measure of exertional intolerance Neuropsychological Testing – documents cognitive impairment (brain fog, processing speed) Symptom Journaling – daily tracking of function (sitting, standing, cognitive stamina) to support claims Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

Is there a “right” diet that will help me feel better? From low-carb to keto to anti-inflammatory diets, the internet is full of strong opinions—and conflicting results. Some people swear by these approaches. Others try them and stop quickly because they’re too hard, too restrictive, or simply don’t work. In this episode of Long Covid, MD, Dr. Zeest Khan sits down with food writer and chronic illness advocate Stephanie Weaver to unpack a more realistic and sustainable approach to diet. This conversation focuses on:  how to think about food triggers what elimination diets are actually for  why strict diets can backfire  and how to approach dietary changes safely and without added stressStephanie shares her personal experience living with multiple chronic conditions, including migraine disease, and explains how she developed a step-by-step approach to identifying food triggers—without falling into rigid or overwhelming diet rules. If you’re considering changing your diet to improve symptoms, this episode will help you think through that decision in a more grounded, practical way. Chapters 00:00 Diet & Chronic Illness  03:03 Stephanie’s Story  08:37 Food Triggers Explained  11:38 Risks of Restrictive Diets  15:55 A Safer Approach  20:33 Key Takeaways Key Takeaways Elimination diets are not one-size-fits-all They are a tool to identify your specific triggers—not a universal solution. Strict diets can increase stress and backfire Overly restrictive plans can add emotional and physical strain, especially in chronic illness. A gradual, flexible approach works better Slow, intentional changes are more sustainable—and more informative. About Stephanie Weaver Stephanie Weaver is a food writer, public health professional, and chronic illness advocate. She developed The Migraine Relief Plan, a structured approach to identifying food triggers for migraine disease. She is also the author of: The Migraine Relief Plan (cookbook + program) Bitter Sweet (memoir about chronic illness, food, and family) Connect with Stephanie Weaver  Website: https://stephanieweaver.com Social: @sweavermph (all platforms) More from Long Covid, MD If you want deeper dives into treatments, research, and how to navigate complex illness: 👉 Subscribe to the newsletter: https://longcovidmd.com  Physician-written breakdowns of treatments  Practical strategies for navigating care  Audio versions available for every article Disclaimer This content is for educational purposes only and does not constitute medical advice. Always consult your healthcare provider before making significant changes to your diet or treatment plan. Keywords (for search optimization) elimination diet chronic illness, food triggers migraine, diet and inflammation, long covid diet, elimination diet safety, chronic illness nutrition, anti inflammatory diet, migraine diet triggers Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

AI is rapidly becoming part of how patients navigate complex illness—but most people are using it without understanding how it actually works, what it’s designed to do, or where it can fail. In this episode of Long Covid, MD, Dr. Zeest Khan is joined by two experts: Dr Leeda Rashid (former FDA physician, digital health) Dr Jennifer Curtin (CEO of RTHM Health) The discussion breaks down:  What AI is already doing inside healthcare (and why that’s different from what you use at home)  Why tools like ChatGPT, Claude, and Gemini are not medical devices The risks of trusting AI-generated answers for diagnosis and treatment  How specialized tools like RTHM Intelligence attempt to address these gaps  The privacy trade-offs when sharing your medical data with AI  How to use AI safely and effectively as a patient This episode is a practical framework for using AI as a thinking partner—not a decision maker. ⏱️ Chapter Markers 00:00 – Why patients are turning to AI 03:15 – How AI is actually used in healthcare (FDA perspective) 07:30 – Why ChatGPT and similar tools aren’t medical devices 15:30 – Specialized AI tools vs general AI (RTHM example) 24:50 – Risks: hallucinations, bad advice, and doctor tension 26:30 – Privacy and HIPAA: what happens to your data 38:25 – How to use AI safely in your care Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

This is a clip from a Substack Live conversation with Zed Zha, author of Consented: A Doctor’s Call to End Medical Violence and Reclaim Patient Autonomy. Watch the full episode and sign up for the newsletter here. In this segment, we examine a pattern many patients recognize immediately, of having to ask their doctor questions in JUST the right way. This is a conversation about managing power, perception, and risk in every medical interaction. For patients, it's exhausting In this clip, we discuss: Why patients feel pressure to “perform” to be believedHow medical training and culture reinforce this dynamicThe impact of labels like “difficult” and “non-compliant”What patient autonomy should actually look like in practiceThis is one part of a longer, in-depth conversation on medical culture, consent, and the future of patient care. Subscribe to Long Covid, MD on Substack You’ll get: Full-length conversations like thisPhysician-level breakdowns of treatments and care decisionsLive discussions and workshopsChapters 00:00 — The Performance Patients Have to Master Patients describe navigating tone, behavior, and perception just to be taken seriously. 02:15 — How Medical Culture Creates This Dynamic Training, hierarchy, and identity formation in medicine. 04:30 — The Problem with “Difficult Patients” How labeling shifts responsibility away from the system. 07:30 — Moving Toward Real Collaboration What a functional doctor–patient partnership looks like. 10:30 — What Consent and Autonomy Actually Mean Why consent is an ongoing process—not a form. Keywords (SEO) substack live interview, Zed Zha Consented, medical culture, patient autonomy, doctor patient relationship, medical gaslighting, difficult patient, healthcare system problems, long covid, chronic illness advocacy Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

Join the community at longcovidmd.com Caregiving can slowly reshape a relationship, often in ways people do not talk about.  In this episode, Dr. Zeest Khan speaks with Kim Moy about the emotional and practical realities of long-term caregiving. YOU'LL LEARN: Why burnout creeps up slowly, and the early warning signs to watch forWhat "ambiguous loss" is and why naming it changes everythingHow to keep your relationship alive when illness takes overPractical tools: the task audit, the 5-minute morning ritual, and the "good jobs list"When and how to ask for help even when you have no budgetKim has spent more than 20 years caring for her husband who lives with ME/CFS while raising two children and working full time. She shares the idea of “ambiguous loss,” the grief of losing the person someone once was while they are still physically present, and why acknowledging that grief can help caregivers reconnect with their loved ones. Kim also shares practical tools she teaches caregivers. She explains how to spot early signs of burnout and how to keep illness from defining the entire relationship. She also shares simple daily practices that help caregivers restore their energy and recognize the invisible work they do. Listen to the episode to hear Kim’s insights and practical guidance for navigating caregiving while protecting your health and your relationship. Resources for chronic illness caregivers: Website & support resources: https://www.caregiverwisdom.netWeekly caregiver newsletter: https://newsletter.caregiverwisdom.netCaregiver burnout quiz: https://www.caregiverwisdom.net/burnoutquiz Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

Dr Anna Maria Bombardieri is a Stanford physician-scientist working with the NIH. She is helping design the RECOVER-TLC study on stellate ganglion block for long COVID.  In this mini-episode, she explains the process, who's involved in this developing study, and what the goals are. Until March 3, 2026, the study design is available to review and open to public comments. Listen to Dr Bombardieri explain the study and watch/listen to our longer video explaining everything about stellate blocks. Watch on YouTube: https://youtu.be/CcGChFTZwvY Then, be part of the science! Share your input with RECOVER-TLC: https://recovercovid.org/news/recover-tlc-seeks-input-planned-study-possible-long-covid-treatment Join the LCMD community for support, science, and news. Sign up at http://LongCovidMD.com #longCOVID #COVID #fatigue #MECFS #POTS #medicine #science Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

👉 Free newsletter & resources: https://longcovidmd.com Watch the video on YouTube: https://youtu.be/CcGChFTZwvY Can a stellate ganglion block (SGB) help long COVID? In this episode, physician and long COVID patient Dr. Zeest Khan speaks with two experts to explain the science, patient experience, risks, and research behind this procedure now being studied in the NIH RECOVER program: -Dr. Anna Maria Bombardieri, physician-scientist helping design the NIH RECOVER study on SGB  https://med.stanford.edu/profiles/anna-maria-bombardieri -Dr. Sara Herman, anesthesiologist performing stellate ganglion blocks in clinical practice. https://softrebootwellness.com/ YOU'LL LEARN: • What the stellate ganglion is and why blocking it may help autonomic symptoms • What the procedure feels like • Which long COVID symptoms may improve (brain fog, POTS, fatigue, smell/taste changes) • Side effects, variability, and realistic expectations • How to vet a provider and stay safe BE PART OF THE SCIENCE: The RECOVER-TLC study design is now open for public comment. Learn more at https://recovercovid.org/news/recover-tlc-seeks-input-planned-study-possible-long-covid-treatment Join the LCMD community for support, science, and news. Sign up at http://LongCovidMD.com #longCOVID #COVID #fatigue #MECFS #POTS #medicine #science  Chapters: 00:00 Understanding Stellate Ganglion Block (SGB) for Long COVID 01:36 Personal Insights and Professional Perspectives on SGB 02:36 Why SGB Got Attention 05:20 How SGB Is Currently Used 06:54 What's the Stellate Ganglion? 11:35 Side Effects 12:26 Anatomy Lesson You Need to Know 17:07 TL;DR: SGB anatomy 17:58 How SGB Can Reset the Nervous System 23:46 Is SGB Permanent? 25:58 What Does SGB Feel Like? 33:15 Possible Results 34:12 How to Find a Provider 38:43 Can SGB Cure Long COVID? 40:05 SGB Research 40:29 TL;DR Summary Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

RECOVER-TLC released a public update on four major long COVID treatment trials. Many patients are asking the same question: how close are we to an approved treatment? In this episode, I break down how RECOVER-TLC chooses treatments to study, why the research process takes so long, and where each of the four current trials stands right now. I’ll also explain what this progress realistically means for people living with long COVID—without hype and without false hope. This is for people who want a clear, honest explanation of long COVID research and timelines, and who want to understand how close—or far—we really are from approved treatments. In this episode: -Why approved long COVID treatments take so long -How RECOVER-TLC selects and designs clinical trials -Updates on baricitinib, low-dose naltrexone, GLP-1 agonists, and stellate ganglion block -What this research means for patients right now Chapters: 00:00 Understanding Long COVID and Research Delays 01:43 The Process of Choosing Targets 03:49 Designing Clinical Trials 07:32 Join the Community 08:25 Baricitinib 09:54 Low Dose Naltrexone (LDN) 11:08 Semaglutide: Exploring GLP-1 Treatments 14:08 Stellate Ganglion Block 16:52 Key Takeaways and Future Outlook #longCOVID #COVID #fatigue #MECFS #POTS #medicine #science #RECOVERTLC #NIH #FDA #NIAID Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

Many people with long COVID see early improvement—then hit a recovery plateau. In this episode, physician and long COVID patient Dr. Zeest Khan explains why long COVID recovery stalls and the three patterns she sees most often when progress gets stuck. Topics covered: Why long COVID recovery plateausThe push-crash cycle and energy envelopeMental health, grief, and decision-making in chronic illnessWhy trying treatments at random can backfireHow to think strategically instead of reactivelyEpisodes referenced: #43: Sensory Integration Therapy for Long COVID Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

For immediate crisis support in the U.S., call or text 988 to reach the Suicide & Crisis Lifeline, offering free, confidential 24/7 help for mental health, substance use, or emotional distress via call, text, or chat. Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

Wondering whether to focus on treating Long COVID symptoms or finding the “root cause”? In this episode, Dr. Zeest Khan explains why chasing a cure can lead to false promises and wasted time—and why treating your most pressing symptoms is the fastest, safest way to improve quality of life. Learn how building small wins creates positive momentum, reduces hypervigilance, and empowers you to collaborate effectively with your doctors. Join the Community at longcovidmd.com Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

This week we're sharing an episode from the archive, Dr Khan's appearance on the medical podcast "Taking Healthcare By Storm." Dr Zeest Khan tells Dr Jean Storm about her long COVID journey and the lessons she’s learned as both a physician and a patient. They discuss peer support, medical uncertainty, and why claiming your own story can transform the way you navigate chronic illness. A candid, empowering conversation. Subscribe to the newsletter at  LongCovidMD.com Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

A quick life update. Learn about Alice Wong: https://x.com/doctor_zeest/status/1991929577841868847?s=20 Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

Dr Khan interviews Dr. Julia Moore-Vogel, Scripps Researcher and lead scientist of the new study using tirzepatide to treat Long COVID. The study is called LoCITT-T, and it is actively enrolling participants. They discuss the study's design, eligibility criteria, and the potential benefits of the drug. Julia shares her personal experience with long COVID and how it has influenced her work. The conversation also covers the importance of making clinical trials accessible to those with disabilities and the innovative use of wearable technology in the study. Keywords Long COVID, tirzepatide, clinical trial, disability, wearable technology Resources: Long COVID Treatment Trial-Tirzepatide (LoCITT-T): https://www.longcovid.scripps.edu Fatigue Severity Scale: https://www.med.upenn.edu/cbti/assets/user-content/documents/Fatigue%20Severity%20Scale%20(FSS).pdf FUN-CAP 27: https://batemanhornecenter.org/wp-content/uploads/2023/12/FUNCAP27-questionnaire.pdf DSQ-COVID: https://www.researchgate.net/publication/360476212_DePaul_Symptom_Questionnaire-COVID Eric Topol, MD Ground Truths: https://erictopol.substack.com/ All of Us Research Hub: https://www.researchallofus.org/  Support the show Sign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.